Please read this article

Anna Rachnel, a woman who is also living with metastatic breast cancer, wrote this brilliant blog post and analysis of Nancy Brinker (sister of Susan Komen) and Komen's commitment to funding research dollars. Please read the whole thing and share it with others any way you can, on Twitter, Facebook or in other ways. This is too important a story not to be told and re-told.

After listening to an televised interview with Nancy Brinker, Anna begins with:

"Unfortunately, this is what I heard. That the public can't handle the unattractive truth about breast cancer. That the only way to raise money for the cause is through feel-good experiences and products. That people shouldn't think about dying from this disease. That 5-year survival rates for early breast cancer are the only statistics that matter. That metastatic breast cancer is still unmentionable and a lost cause financially. That more of Komen's money is going to research than is actually the case."

 And she ends with:

"I've said this before and I'll say it again; screening, treatment and education will never result in a cure for my cancer, or any other late stage cancer. Game-changing research, the kind that is generally done in a laboratory, is the only hope that I have that my cancer will be cured. "

Amen to you, mets-sister!

First Gemzar today

My first treatment with Gemzar today went smoothly. Not knowing if I needed to have blood drawn for labs, we arrived early to find that was indeed the case. A friend came to hang out with Rik and I while we waited for the nurse to call me.

After waiting almost an hour for the pharmacy to prepare the drug, the actual infusion only lasted about 45 minutes. Of course, by 1:15 we were both pretty hungry, so Rik bought some piroshki (mine spinach and mushroom; his potato and mushroom). We noshed those right up, and after the treatment was over, went to Molly Moon's for ice cream. (I had chili chocolate, which was DELICIOUS!).

I crashed at home for my usual post-chemo nap, made dinner (broiled salmon, kale "chips" and corn), and am already in  my pajamas by 8 PM. I plan to take it easy tonight, maybe read a bit and watch the fashion coverage from the Oscars.

Here's hoping for Gemzar to be highly effective, well-tolerated and minimal side effects.

Gemzar in my future

I saw Dr G yesterday and got the results of my recent CT scan. This (perhaps lazy? or just busy) radiologist wrote that I have "close to ten low attenuation lesions consistent with metastases in the right and left lobes" of my liver. (The previous radiologist counted seven lesions in my liver, so from this radiologist's report we don't really know if there are actually more now.) The liver lesions appear to have been stable since the last scan in 2010. The potential lung metastasis, originally found in 2002,  has decreased in size since 2008, and the bone mets appear "grossly stable." By physical exam, the mass in my right breast is now measured at 7.5 mm, a clear improvement. The largest scalp met, which to me seems to have grown, gave me a little pain earlier this week, and Dr G said that might be a good sign; i.e. it's responding to the chemo.

However, one of my blood markers for the liver is just a scootch above normal, so Dr G does indeed want me to start Gemzar, another chemotherapy, probably on Monday. We also recalled that he discontinued Fareston (toremifine) after only a couple of months because I developed uterine bleeding while taking it. Now that I've had a hysterectomy, he may choose to put me back on this estrogen-blocking drug, since I had a long run of two years on its cousin tamoxifen.

I am okay with more chemo, but I sure wish that it would really kick some cancer butt. Stable is good, but I'd like to see these liver lesions shrink to nothing.

Outrageous!

This news is outrageous! The TSA wanted to pat down a woman because she'd had a mastectomy and was wearing a prosthetic breast form?! I am appalled and registered my complaint with the TSA. Click here for a link to the TSA complaint form. Use the section entitled "Inappropriate Screening/Pat Down Screening."

Alaska lawmaker refuses TSA pat-down at Sea-Tac

An Alaska state lawmaker is returning home by sea after refusing a pat-down search at Seattle-Tacoma International Airport.

By BECKY BOHRER
The Associated Press

JUNEAU, Alaska — An Alaska state lawmaker is taking a ferry home after refusing a pat-down search at Seattle-Tacoma International Airport, a spokeswoman said.

Rep. Sharon Cissna underwent a body scan as she was preparing to leave the airport Sunday and was then required to undergo the pat-down by Transportation Safety Administration (TSA) officials, said Michelle Scannell, her chief of staff.

Scannell said the TSA called for the pat-down because the scan showed Cissna had had a mastectomy.

The TSA, on its website, says security officers "will need to see and touch your prosthetic device, cast or support brace as part of the screening process."

Scannell did not elaborate beyond the statement.

TSA spokesman Kawika Riley, after being asked to respond to Cissna's comments, issued a general statement that did not mention Cissna or the Anchorage Democrat's claims.

Scannell, in her statement, said Cissna was ordered to submit to a "very intrusive pat-down or leave the airport." She said Cissna, who had been in Seattle for medical treatment, was scheduled to return to Alaska via ferry.

Scannell could not immediately say how soon Cissna would return. The Legislature is in the midst of a 90-day session.

Riley, in a general statement, said the TSA is "sensitive to the concerns of passengers who were not satisfied with their screening experience and we invite those individuals to provide feedback to TSA."

Riley did not immediately return a phone message Monday.

Both full-body scanners and pat-down searches have come under increasing criticism as the TSA has stepped up its airport-security measures.

Heavy socializing

This weekend has been full of people! From Shabbat dinner with friends to a crowded synagogue and two birthday parties, we have been shmoozing all over town.

On Friday it was a dear friend 60th's birthday. Feeling lonely, he organized a Shabbat dinner for himself, and we stepped up to the plate, despite the fact that everyone invited knew that there was a surprise party for him planned for the next night. The hosts picked up huge balloons and made a delicious dinner of chicken tagine, couscous and green salad; the birthday boy brought the challah and champagne; and I made the world's best non-chocolate dessert, based on a recipe from Cook's Illustrated: lemon bars and lemon flavored whipped cream. We had a great time and managed to keep the secret about the next day's party.

On Saturday morning I was scheduled to lead putting away the Torah scrolls and the musaf service at synagogue. I haven't done this in almost a year, due to the dislocated elbow in April and the practically constant chemo since May. I prepared some new tunes, and got my equivalent of stage fright -- when I opened my mouth to sing a new song, something entirely unexpected came out. Oy!

This has happened once before, when I let the pressure of the moment get on top of my feeling ready to sing a new piece. Yesterday I managed to recover and pull through the end of the Torah service, and by the time we got to musaf I was fine. But for a few minutes I kept saying to myself: "WTF? What was that?"

Saturday night's first party was the surprise one. I had ordered the birthday cake from Bakery Nouveau and brought it to the restaurant. About 20 people gathered to await the guest of honor, who arrived on time and acted surprised to see us all. We enjoyed a terrific Indian dinner. The super-moist chocolate cake with 64% chocolate mousse, chocolate glaze and chocolate shards was a big hit. The chef even wrote happy birthday and drew a sailboat on top.

Around 9:30 PM we arrived at the second party in time to do some great dancing. Rik stayed for a bit to say hi to people but I let him off the hook to go home early, and asked friends to take me home later. We danced and danced to the music of several local Balkan bands. Around midnight I gave up, and probably missed some fun late night singing, but by this point I was pooped. One of the bands was seriously over-miced and too loud for conversation, so I spent a large part of their set shouting instead of being able to talk.

This morning it was really hard to get up and go to a synagogue meeting on time, but I barely managed the feat. My voice was down in its lowest depths, my eyes are sagging, but this great weekend was worth it!

New chemo

Navelbine, the current chemo I've been on for the past six weeks, isn't working. Yesterday's blood work shows my tumor marker continued to grow. Dr G has decided to have another scan and change to another chemo.

I will get a CT scan of my chest, abdomen and pelvis next week and then likely start Gemzar (gemcitabine) weekly. It's supposed to be as well-tolerated as Navelbine and appears to have similar side effects. such as flu-like symptoms(muscle pain, fever, headache, chills, fatigue); fever (within 6-12 hours of first dose); fatigue; nausea (mild); vomiting; poor appetite, low blood counts and the rather odd side effect of skin rash.

The increase in tumor markers comes as no surprise to me. I'm frustrated that none of these four chemos (Abraxane, Doxil, Adriamycin and Navelbine) have had much impact on my cancer. Well, we don't really know about the Abraxane, because Dr G took me off it after a scan revealed liver mets that we didn't realize existed. Going back on Abraxane remains an option.

Evidently there is another patient with the same disease progression as mine, who has responded well to Gemzar. So I'm hopeful that this one will do the trick -- highly effective, manageable, with minimal side effects.

Meanwhile you can think of me as the Energizer bunny of chemotherapy. I just keep plugging along!

Neuropathy

Peripheral neuropathy is one of the side effects associated with certain chemotherapies. The toes and fingers feel numb or tingle. I think I'm getting this after two rounds of Navelbine. The tips of my toes feel numb. Other symptoms I'm experiencing include constipation and cramping in my feet.

I plan to report all of these symptoms to Dr G when I see him later this week. Hopefully the neuropathy will remain minimal and then disappear after I discontinue the Navelbine.

Yet one more thing to deal with in CancerLand.....

Happy birthday to Bob!

Bob is six years old today and does he love his new chew. He ate it all. (It was supposed to last for a couple of days....)

Dunava retreat

Dunava spent this past weekend singing, eating and bonding at our second annual retreat at Mildred's B&B on Seattle's Capitol Hill. We rented the whole house for 24 hours.

Some of us gathered in the morning at Molly Moon's's to celebrate International Ice Cream for Breakfast Day. I loved my buttermilk waffle, which I topped with one small scoop of salted caramel and one small scoop of coffee, chocolate chunks, a little hot fudge sauce, some vanilla bean caramel, walnuts, and berries. It was great with a cup of black coffee. (Rik had oatmeal with maple walnut ice cream.)

Dunava gathered at noon and launched into four hours of intense singing. We snacked while reviewing our recent new songs, learned one new piece, and started on another. By 5 PM we were ready to dance our way around the house. Our potluck dinner featured potato-corn-kale soup, eggplant lasagna, marinated mushrooms, cooked red cabbage, green salad, mulled wine, "fauxstess" cupcakes, white gingerbread, and more.

After dinner we found ourselves loudly singing Girl Scout and summer camp songs like Miss Mary Mack, The other day I met a bear, etc. (I think the mulled wine helped.) It was a real reach back into my childhood. Luckily I think I remember every song I have ever learned. Then we played some very silly games and watched Mary Poppins and sang along while eating popcorn. I think we went to bed around 1:30 AM.


In the morning our hostess prepared a fantastic breakfast of mushroom/asparagus crustless quiche, fresh fruit, coffeecake, orange juice and coffee and tea. We gathered once more around the piano to review some music and departed around noon, sated with good food, lively music, and some particularly good girl bonding.

Counts down

My blood counts were again slightly down after last week's dose of Navelbine, so on Tuesday I had a shot of Neulasta to bring up my white cell count. So far I continue to have a fair amount of energy. Today I walked Bobka the dog for almost the full two mile long walk (cut short by only two blocks). Not to mention the afternoon's jaunt along West Seattle Junction. And tonight's synagogue meeting and choir rehearsal.

This week I have yet to experience side effects from either the chemo or the Neulasta. The word remains out on how effective this chemo is; more on that next week. Please continue to keep your collective "fingers" crossed for highly effective, very tolerable and minimal side effects.

West Seattle

I wandered around West Seattle today. The sun shone brightly as my friend L and I browsed our way along California Avenue SW (The Junction). We stopped in at a couple of furniture stores, Menashe and Sons Jewelers, Twilight Artist Collective, and Edie's Shoes. At the Antique Mall I found two tiny glass salt spoons to complete my salt cellar collection. We ate pho for lunch at Than Brothers and enjoyed dessert and coffee/tea at Bakery Nouveau. All in all, a most lovely and delightful afternoon! Next week's outing might feature IKEA.

Navelbine #4

I had my fourth dose of Navelbine today (the second dose in the second round). My friend R visited the whole time and because things took a bit longer, we had a lovely catch-up with each other.

I felt fine enough afterwards to go to the grocery store, come home and start a pot of lentil soup before I crashed and took a nap.

Dr G wants me to get Neulasta tomorrow since my white blood cell counts and hematocit were a bit down. That will mean four trips to Capitol Hill this week, three of them for cancer-related reasons. Thankfully this chemo has so far been remarkably tolerable, with minimal side effects, and allows me to drive and generally live a normal life. The jury is out on how effective it will be but I am still hopeful that it will kick some serious cancer butt. I get my next tumor marker drawn next week.

Food

Yesterday's Oprah show focused on veganism. I found it fascinating that so many of her employees were willing to try a vegan diet for a week (no meat, poultry, fish, dairy or eggs). Although watching the section on Cargill Meat Solutions made me squirm in its depiction of animals headed to slaughter and processing into the packaged meat we buy in stores, the comment from the Cargill general manager, about treating the animals with dignity at every stage, was very thought-provoking. I don't know how the kosher slaughterhouses stack up next to the Cargill model, but I hope better than others.

I try to eat with intention, and enjoy a diet of mostly whole foods, since I like to cook from scratch. The only packages I tend buy are flour, sugar, cereal, pasta, and bread (there very few boxes in my pantry), and I do buy whole grain products. But I enjoy eating meat, poultry, dairy, eggs and fish. Author Michael Pollan's comment on the show, that we should eat with intention and a care for where our meat etc. is sourced, resonated with me. For some time now I have been buying only cage-free eggs and organic milk.

If more Americans could be persuaded to eat a whole foods diet, I believe we would have a great impact on the way meat is processed in our country and be healthier as a people.

Sunshine on my shoulder makes me happy

It's a beautiful sunny day in Seattle (which also means it's cold out, but hey, sun is worth colder temperatures). I ran around a lot yesterday and really crashed for a two hour nap in the afternoon, then of course found it hard to get to sleep at night. Today I am planning to take it easier, only one appointment and rehearsal tonight.

I felt strong enough to take Bobka the dogka on the long walk, which is about two miles and includes a couple of hills. He really enjoyed himself. I listened to the new Dunava music I'm supposed to be learning, sang along unless I became short of breath, and went slowly. I was able to do the whole thing, but maybe pushed myself too hard on the last block. I am trying to stay in shape during the Navelbine, and this daily, longer walk is the best exercise I get. On a sunny day I don't mind trying harder.

This afternoon I will see the naturopath and find out what he recommends to keep me strong.